Jenny Woolsey's blog, with posts about living with Crouzon syndrome and Down syndrome. Fresh, real and raw.

Wednesday, 23 August 2017

Blog 96 - Charlotte Fien's Speech to NIPT Ethics Committee

As a parent of a child with Down syndrome, I am angry and upset with the NIPT blood test and the fact that 90% of babies who are prenatally diagnosed are terminated. Doctors are giving out the wrong information on these people and putting a lot of pressure on parents.

Many parents who have children with Down syndrome are raising their voices in objection to what doctors are doing with the test results.

I came across one adult with Down syndrome who is speaking up. I am sure there are others. This lady, Charlie Fien has made a presentation to the NIPT Ethics Committee. In her speech, Charlie says how she feels in a heartfelt and raw way. I feel her pain and I have wondered how this is affecting people with Down syndrome who are old enough to understand what is happening in our society. I worry about how my daughter will feel when one day she learns that society is trying to eradicate people like her just because they were born with an extra chromosome.

Please read the following:

This is the speech I wrote for my Public Speaking and Presentation class at the Goldsmiths University of London. Hope you all like it. I'm hoping the NIPT ethics committee listens.

Good afternoon. My name is Charlotte Helene Fien.I want to thank Philip Dunne and the NIPT Ethics Committee for allowing me a voice.

I want to start with a quote from a man I admire, Martin Luther King
"Always feel that you count. Always feel that you have worth and ALWAYS feel that your life has meaning"

I want all of you to imagine what it would feel like to KNOW that 90% percent of the world wants you to disappear to no longer exist. People with Downs Syndrome have ALWAYS existed. There are paintings from the 13th century showing children with Down's syndrome. We are depicted in Pre-Colombian Art. Throughout history, DS has been feared and considered something shameful.
We have been hidden from society. In the 1940's it was done with gas chambers killing thousands.
In the 1950's we were silenced by being hidden away in hospitals and forgot about.
Today, you have become more clever at getting rid of us. You do it by hiding behind the word choice. It's not a real choice as parents are told lies. They are given info about DS from 30 years ago. It's all done with the goal of eradicating DS and saving millions in benefits and health care.
The truth is we aren't that different to you.
Well, apart from the fact WE don't start wars, hate, rape, and murder.
We are a nicer more accepting version of what you call "normal". The NIPT isn't an ethical test. It's a test being used to search for DS and destroy it. You can't use the NIPT to choose the sex of your baby
Because that's unethical. So, how is it ethical to search and destroy for Down's syndrome?
If you're going to allow the NIPT then be honest about it. Say the truth about why you want DS eradicated. We cost a lot in benefits and medical care. Give parents real accurate info about DS
I believe no matter how much you try to eradicate us we will survive. We are here for a reason.
Whether you like it or not we will be here in future. The ONLY difference is WE won't be quiet anymore. You won't be able to silence us. I won't ever stop fighting for our right to exist.
I will leave you with the words of a man who gives me courage and strength every day,
Malcolm X
"We declare our right on this earth to be a human being, to be respected as a human being,
to be given the rights of a human being in this society, on this earth, in this day, which we intend
to bring into existence by any means necessary."
BY ANY MEANS NECESSARY